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Living with cluttering

Cluttering is sometimes confused with stammering. Denise Cox describes how for many years no one could diagnose why she spoke as she did, and the impact cluttering has had on her life.

As far back as I can remember I have always talked quickly and have had problems communicating clearly, This has had a great impact on my life.

As a child I spoke fast but it never really bothered me, I was just a child who enjoyed playing. I do remember during primary school feeling nervous and embarrassed when I had to read aloud to my teacher. My teacher picked up that I spoke fast and I missed words out in my writing. It's like my brain is working too fast for my mouth and hand to keep up. I was then sent for a dyslexia test, which came back normal.

It was during High School when other pupils made fun of me and I found it hard to make friends that I became aware of my problem. My speech was rapid and all my words would run together, so my speech was unclear and difficult to understand. It was not easy to read aloud in class or do oral exams etc.

Nursery nurse

Since childhood I always wanted to be a nursery nurse so after my GCSEs I started a NNEB. During the first year my tutors noticed my speech and felt it was anxiety, so I was sent to a counsellor. The counsellor concluded that I did not suffer from anxiety and suggested I could have an over-active thyroid. I went for blood tests, which came back normal.

I studied hard and passed all my written assignments with merits. However, I had problems during the work placements and the teachers in the nurseries gave me a U ('ungraded') for communication. After the first year I was told that although I passed all the theory I couldn?t continue the course as I failed the placements and they didn't think I would be a suitable nursery nurse because of my speech. This broke my heart and really knocked me back. I could understand why they made their decision, as I couldn't communicate with the children and parents properly and had difficulty reading stories to the children.

This was a really low point in my life, wondering why I spoke so fast? Why couldn't I control it? Why couldn't I speak like everyone else? Will I be like this forever? I had days when I felt there was no point in carrying on life, if this was how things were going to continue.

After two sessions the therapist told me I didn't have a stutter or a stammer so she couldn't help me.

Not a stammer

I managed to somehow pull myself together as I have a love for life and great family and friends around me, and went to my GP to seek help. My GP referred me to me a speech and language therapist. At the time I don't think cluttering was a recognised condition. After two sessions the therapist told me I didn't have a stutter or a stammer so she couldn't help me. This was another knock back and I was beginning to lose all hope, I tried to remain positive and think of the good things in life.

I spent a few years in various jobs trying to get on with life, but all the time in the back of my mind I was wondering what was wrong with me and wishing I was normal. My next idea was to try hypnotherapy, this didn't work, and I just ended up wasting money.

I thought I would contact my GP again, this time I was referred to a counsellor, as they felt I could be anxious (Haven't I been down this road before?). I was seen by a young psychologist, who was very enthusiastic. She felt I might have ADHD, so arranged for me to go to Bristol for tests. After numerous tests and visits to Bristol I was told I didn't score quite high enough to be diagnosed with ADHD. The consultant tried me on various anxiety drugs hoping that my body would get over-anxious and react by slowing down. None of these medications worked, and the anxiety drugs made me quite ill. I started having bad heart palpitations and they brought on a panic attack, my GP put me on beta blockers for a short period.

Name but no therapy

I was determined to find answers and discover what was wrong with me, so I searched the internet and emailed speech and language therapists. I was so pleased that a Doctor from Reading replied. He said he may be able to help me and we arranged to meet. After a consultation with Dr Ward, he said he knew what was wrong with me and diagnosed me with a clutter. I couldn't believe it, I finally had a name for my condition, and other people suffer from it too. It felt like a huge weight had been lifted off my shoulders, I finally felt supported.

He offered me treatment, and we decided to do it through the NHS. I was so excited and arranged to see my GP who agreed to refer me. However there was a slight problem - because I live in Wales my case had to go through the Local Health Board and they said that I should be treated locally first. So I was referred to a local speech therapist (again). To my surprise she had heard of a clutter, but she wasn't very helpful and didn't really know what to do with me. After 8 sessions there was no improvement in my speech, so my speech therapy stopped.

Impact

Having a clutter has affected me so much. I have low self-esteem and lack confidence. I am aware that I am speaking fast but I can't control it, it takes over me. My clutter is on my mind around 85% of the day, when I am out and about doing normal things like ordering food. In work I am constantly worrying about talking to people and how people perceive me. At home I can't do everyday things like order a taxi, ring the bank or book appointments. I get so frustrated when I talk on the phone to people and I don't get understood and can't get my point across. When possible I use emails to communicate.

My career has been dramatically affected and I am not in a job that I would choose if I could talk normally. I choose jobs that don't involve communicating and talking on the phone, which limits what I can do. I have such potential but the clutter holds me back. Until you have a communication disorder you don't realise how important communication skills are in everyday life. I would do anything to be able to talk normally. I am still hoping that one day I will be able to talk normally and not get blank faces from strangers. I have lost count of the number of times people have said "I can't understand, you're speaking too fast" or "slow down". I wish I could. I get embarrassed, angry and frustrated by these comments. I have experienced a lot of rude people who just don't want to talk to me as they can't understand me.

I feel that I have been let down by the health system, due to lack of knowledge of cluttering. I really feel that there is a strong need to get information out there about this communication disorder. If more people were aware of it, perhaps I would not hit so many brick walls in my life.

Extended version of article from the Summer 2010 issue of 'Speaking Out', page 19